LYNN CERILLO, MS CCC/SLP KRISTIE SORIANO, MS CCC/SLP ASHA CONVENTION November 22, 2014

Transcription

1 LYNN CERILLO, MS CCC/SLP KRISTIE SORIANO, MS CCC/SLP ASHA CONVENTION November 22, 2014

2 Financial: Salary at JFK Johnson Rehabilitation Institute for both speakers. No honorarium for lecture Non Financial Disclosure: Nothing to disclose.

3 Decisions are not made in a void. They always occur in the context of relationships. Medical decisions are no exception; and the relationships that affect them are among the most interesting and complex. Flather-Morgan, Alexandra Fellow, Pulmonary and Critical Care, Mass General Hospital Fellow, Division of Medical Ethics, Harvard Medical School

4 WHY ARE WE HERE?? To examine more closely the impact of our findings and recommendations on the quality of life of our patients. To discuss the everchanging level of responsibility of the SLP in the areas of palliative care, hospice and end of life decision making.

5 As speech-language pathologists who treat patients with dysphagia we may at some point work with patients who are dying. Sometimes it is the presence of the dysphagia itself that leads to the death of the patient. This topic is central in our need for continuing education re: the legal and ethical issues and challenges that arise in the care of persons who are dying. WAGNER, 2009

6 89 year old male with pyriform sinus tumor

7 QUALITY OF LIFE ETHICAL DECISION MAKING SAFETY OF THE PATIENT PATIENT AUTONOMY

8 It all begins with a bedside dysphagia evaluation, and then the quest begins Quest for answers Quest for resolving current medical crisis Quest for balance between what is safe for the patient and what will make the patient happy

9 Assess and make diet recommendations Educate pt, staff and family/caregivers regarding diet; precautions and any specific compensatory strategies Communication with other disciplines via medical chart and/or verbally regarding results When an altered diet has been recommended, follow up occurs and this is when further communication with other disciplines is necessary

10 The NPO recommendation can be complicated difficulties with placement of temporary alternate feeding devices (ie: NGT or OGT) Delivery of medications Verbal patients begging for food/water Impact on discharge planning and LOS (length of stay)

11 Having difficult conversations Responding to questions about what is next if pt fails bedside evals Explaining difference between NGT/OGT vs. PEG (g-tube) Recommendation for hospice referral when you are aware of an AD in place for no tube and pt shows no signs of progress Being able to provide a limited and simple non- prejudicial explanation regarding benefits/burdens of PEG/G-tube placement

12 Diet-- consistency for food/liquid Positioning Medication presentation MBS or FEES ENT or GI consult Frazier Water Protocol or NMES Suggestions to improve nutritional intake

13 Diet modifications Liquids may need to be thickened Foods may need to be altered such as in the form of puree/fine chopped/ dental soft General safe swallow strategies slow rate; small bites/sips; alternate bites/sips; use liquid wash and lingual sweep to clear oral residuals

14 Medication presentation May suggest to be presented crushed or whole in applesauce/pudding Positioning Pt usually should be in 90 degree position or as close to it as possible. Recommendations may include pillows/wedges placed strategically for optimal positioning. An OT/PT consult is sometimes requested if pt not already on program and positioning is difficult

15 Suggestions to improve nutritional intake Provide nutrional supplements between meals rather than with meals Present foods/liquids throughout the day to slowly increase intake Reduce background noise/distractions when eating or arrange meals as a social activity vs. Eating alone Identify what time of day/mealtime your patient tends to eat better Have easy to eat foods available for when pt is tired and doesn t feel like eating (ie: pudding; yogurt; as)

16 Patient s immediate presentation-- Presence of fever/pulmonary status Presence of NGT/OGT If s/p extubation and for how long Management of secretions Constant coughing

17 Presence of fever/pulmonary status Pt may not perform well if not feeling well due to fever or pneumonia/breathing issues. Presence of NGT/OGT NGT- can be uncomfortable and negatively impact the swallow of some patients but most are able to tolerate it OGT- should be removed prior to any po trials given

18 S/P extubation How long was pt intubated When were they extubated JFK guideline- will see pt for dysphagia evaluation 24 hours after extubation and usually not sooner Ask me why?????????

19 Patient who is coughing constantly at baseline before, during and after any po trials given How is pt managing their own secretions? Drooling; wet breathing; wet cough usually signs that swallowing is also not intact, But not always.

20 Diagnosis Recommendations Prognosis Advanced directive Level of arousal Prior level of function Pt s desire to eat/drink and their own definition of quality of life D/C placement & amount of supervision they will have

21 Diagnosis/prognosis Best case scenario: the MD has had a realistic conversation with pt/family regarding prognosis and treatment plan options The usual case scenario: the pt/family have no idea what is going on or how bad the situation may actually be and its all hinging on the almighty dysphagia evaluation

22 Priority question: Does this person have an advanced directive? If yes, then everyone needs to familiarize themselves with the patients wishes regarding alternate means of nutrition/hydration if any If no, then discussions with the patient and/ or with family need to occur

23 Level of arousal Is the pt consistently arousable and able to maintain sufficient arousal for adequate and safe po intake??

24 Prior level of function and pt s desire to eat and drink The prior diet/level of intake and pts desire to have PO intake are strong pieces to the puzzle when developing a treatment plan for the pt with dysphagia. Everyone has a different definition for how they would describe good quality of life

25 D/C PLACEMENT AND AMOUNT OF SUPERVISION This is critical for diet recommendations that may include strategies/positions and mandatory supervision in order to prevent aspiration

26 Variability of the testers Variability of the patients Small window of time that pt is being tested Positioning Family/caregiver involvement

27 Variability of testers Age Emphasis of educational program Years of professional experience Type of professional experience Personal experiences that shape the way we look at situations Mood/comfort level with family present

28 Variability of patients Age Diagnosis How sick are they? Level of fatigue Level of arousal Level of cooperation Level of motivation

29 Small window of time that pt is being tested-- is it their best moment? Their worst moment? Or does it reflect how they would be with a full meal Positioning-- how can poor positioning affect the results of the bedside evaluation?

30 Family/caregiver involvement--- How much do we love when there is consistent involvement from 1:1 caregivers/family to follow through with strategy use; positioning; etc? How much do we hate when there is constant involvement from 1:1 caregivers/family who we know are giving incorrect consistencies and not following through with recommendations???

31 Beneficence: the obligation to provide treatment that will benefit the patient do good Non-maleficence: it is necessary to prevent harm do no harm

32 Autonomy: heed the desires of individuals concerning their self determination. If their desires are not known, keep their best interests at the forefront, weighing the benefits and burdens of proposed course of action (Flather-Morgan 1994)

33 Compassion: suffer together with the patient--trying to understand intellectually and emotionally the patient s experience. We must exhaust all possibilities. Need to invite, persuade, reason with patient alternatives. Every adult has the right to choose what will be done with his/her body. Flathers-Morgan 1994

34 Be sure to provide realistic hope More difficult in the outpatient, LTC, and homecare settings Case presentation How do you discharge? What is the realistic hope?

35 Varying sites of treatment and differing levels of support with or w/o support Acute Care Inpatient rehab Subacute rehab Long Term Care Homecare

36 The many branches of the decision tree represent the vast amount of choices/options available to us as clinicians, when assessing a patient s swallowing, resulting in recommendations that will ultimately and significantly impact their overall quality of life

37 Each case must be looked at and examined individually What led up to the event What was happening before in terms of swallowing What was the respiratory status prior History very important

38 The acute care pt who has an NGT already Pt is unarousable Limited to no response to intra oral stimulation with toothette This occurs over 2 sessions

39 Pt has MBS history of silent aspiration with thin/nectar thick liquids. Pt safe with nectar thick liquids using chin tuck but only with supervision. You come to see pt for bedside and he is on a regular diet / thin liquids and he says he s not doing anything you say. Supervision issues/how recent was MBS? Non compliance: what to do? Safety vs quality of life? Education and get buy in? (Hahaha)

40 The walking/talking outpatient MBS pt who comes in to r/o silent aspiration due to pneumonia, and following the MBS, it is recommended that he is made NPO due to confirmed deep silent upper airway penetration for all consistencies what do we do? Considerations: ad; prior hx of respiratory issues

41 DEFINITION Correlates highly with findings of depression, which manifests in progressive apathy and functional decline with eventual loss of engagement in life, including a loss of willingness to eat or drink which culminates in death

42 Dietician consult--the evaluation and treatment of each patient is a multidisciplinary process and each professional has their role. Once a pt has failed dysphagia evaluations, follow-ups and/or mbs, the focus shifts from temporary nutrition/hydration to a more permanent solution (anh). The dietician is an integral part of the team, as he/she is following each patient from admission, and has to assess what is best for each patient in order to maintain adequate nutrition/ hydration and facilitate a safe discharge and POC

43 Sometimes the outcome of the bedside dysphagia evaluation is a fine line determination between a recommendation for alternate nutrition or a referral to hospice. It provides information that can assist physicians and families in making end of life decisions

44 At the end of life, each story is different. Death comes suddenly, or a person lingers, gradually failing. For some older people, the body weakens while the mind stays alert. Others remain physically strong and cognitive losses take a huge toll NATIONAL INSTITUTE OF AGING, 2008

45 Definitions CPR cariopulmonary rescusitation ANH- alternate nutrition and hydration DNR - do not rescusitate DNI - do not intubate DNH - do not hospitalize AND - allow natural death

46 Definitions Advanced directive- (also referred to as a living will) indicates a person s wishes as it relates to medical treatment at the end of life. It is a set of instructions that a person wants medical professionals to follow, especially when the patient has lost the ability to communicate

47 Does the patient have an advanced directive? Why is this information so important and good to know at time of admission and especially at the time of the dysphagia evaluation? Can the patient communicate his/her wishes at the current time? Has there been a health care proxy designated? The sketchy or over complicated AD

48 Definitions Polst NJ practitioner orders for lifesustaining treatment- a form that will serve to translate an individual s treatment goals into a set of portable medical orders that must be honored in all settings

49 Definitions Palliative care- the comprehensive care and management of the physical, psychological, emotional and spiritual needs of patients and their families with chronic, serious or lifethreatening illness. Palliative care allows the potentially curative treatment to continue where appropriate, while focusing on relieving symptoms that may come with the disease progression or the treatments received

50 Definitions Hospice care --designed to provide care for those approaching the final stage of life. Hospice care focuses on relieving symptoms and supporting patients with a life expectancy of less than six months.

51 Hospice vs. Palliative care Hospice-mostly in home. Some states administrate that if a person is enrolled in hospice he or she must forego all life sustaining treatment, including parenteral nutrition (Wright & Katz 2007) Palliative care: treatment that relieves symptoms caused by disease, rather than cure the disease itself. THE FOCUS IS ON QUALITY OF LIFE, ENHANCING FUNCTIONAL ABILITY, AND FACILITATING DECISION MAKING. (Goldstein & Fischberg 2008)

52 Pt/caregivers may decide to let pt eat/drink what they want but agree to close monitoring by MD (ie: regular CXRs and education has been provided regarding early signs/symptoms of possible respiratory issues such as low grade temperature and/or congestion. If any of these occur, they are to report this immediately to the MD) Pt/family may agree to recommended altered diet with dysphagia follow up at home or in LTC/SA facilities for possible upgrade

53 Altered food diet for the patient who is SOB due to end stage COPD; emphesema; etc. If you can t breathe, you can t eat and the risk for aspiration is higher due to poor timing of respiration and the swallow. So this pt may agree to a softer diet or even puree for ease of intake.

54 Pt may agree to altered diet but initiate the free water protocol Sips of water/ice chips allowed in between meals/meds after supersonic oral care Monitor lung status via auscultation and CXR s Monitor for overt coughing/choking which impacts the overall quality of life

55 Assess for safe swallow Diet modifications as appropriate Usually only eval and/or one visit to provide education to caregivers/family members regarding consistencies; positioning; feeding strategies and/or cues during self feeding if pt still able to do so

56 Nursing Home patient: Anna-101 year old

57 Decision-making guided by these principles and virtues is characterized by: Clear communication of relevant facts and values An empathetic balancing of the benefits and burdens of proposed treatments sincere respect for each other s differing convictions (Flather-Morgan)

58 In caring for our dysphagia patients, we should try to follow these guidelines: Tempered by nonmaleficence, we try to avoid inflicting harm Prompted by beneficence, we try to provide compassionate caring Respecting autonomy, we seek to restore patients integrated self-determination (Flather-Morgan)

59 Flather-Morgan, Alexandra (2004) Caring for patients with dysphagia: some ethical considerations ASHA Special Interest Division 13 Newsletter October. Fletcher, J.C., Miller, F.G., & Spencer, E.M. Clinical ethics: history, content and resources Goldsmith, Tessa Ethical issues facing the speech-language pathologist in the acute care setting ASHA Special Interest Division 13 Newsletter June Goldstein, N.E. & Fischberg, D. (2008) Update in Palliative medicine. Annals of Internal Medicine, 148 (2), Jonsen, A.R., Siegler, M., & Winslade, W.J. (1992). Clinical ethics. New York: McGraw-Hill. Leslie, et al McHorney, CA, Robbins, J, Lomax K, Rosenbeck JC, Chignell, K, Kramer AE, et. al. The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity. Dysphagia. 2002; Wright, A.A., & Katz, I.T. (2007). Letting go of the rope-aggressive treatment, hospice care, and open access. New England Journal of Medicine, 357 (4),